seizures/ meds Topamax

I have just started this new med last nov. its killing me with the numbness. does anyone else have that problem?

I've been on these for approx 8 months now, i don't have numbness but the pins and needles i experience in my fingers and toes can get a bit uncomfortable. A small price though for a little bit of control of my epilepsy.

hello let me tell you some thing about the medication topamax that many docters do not know about The one thing that is very important to me is my health my docter perscribed topamax for me and if you over dose the medication your brain cells die permently and your head will shrink tremendously Of course I know topamax makes you lose a tremendous amount of weight but you have to add this in a part of your side effects for topamax that if you over dose it the medication it can permenetly make your brain cells die and you will see that your brian will shrink tremendously

Mickey wrote:

I have just started this new med last nov. its killing me with the numbness. does anyone else have that problem?

Have you talked with your doctor/neurologist about switching medications?

I swear sometimes the side effects of the meds can be worse than the disorder itself,but depending on the severity of the side effects it's worth it in the long run for the chance to lead a siezure free life.
The main thing I hate though is the alcohol restrictions....I was only 19 when I was first prescribed meds for the treatment of the disorder so that really put a damper on my 21st birthday plans for sure & it just plain stinks to not be allowed to enjoy an alcoholic beverage such as spiked eggnog for example.

While everyone around you is allowed to get nice & plastered you're relegated to drinking just the non alcoholic version.:(

I have the same problem with the pins and needls in my feet and hands, and occasionally it gets almost to the point of numbness. It's listed in the side effects of Topamax. Actually, sometimes that's how I remember to take it, if I don't take it immediately when my alarm goes off (I have the alarms on my cell phone and PDA set to go off 15 minutes apart from each other every 12 hrs so I will remember to take it - 26 yrs of being on phenobarb got me used to just taking my meds whenever I went to bed, not on a schedule - this has been hard to remember). The tingling seems to happen after the meds have worn off and a couple of hours after I've taken them.

The no-alcohol thing was easy for me, since I was diagnosed as a kid.:-)

sara wrote:

if you over dose the medication your brain cells die permently and your head will shrink tremendously

I think overdosing with pretty much any med will kill brain cells. Even drinking too much kills brain cells. One reason they've stopped prescribing phenobarb is (got this from a neuro article online when I was trying to research cognitive dysfunction in epilepsy a couple of weeks ago) that it causes such damage like that, and, well, because it lends itself so well to suicide. Sigh.

As far as shrunken heads go...

crazybaby wrote:

I have the same problem with the pins and needls in my feet and hands, and occasionally it gets almost to the point of numbness. It's listed in the side effects of Topamax. Actually, sometimes that's how I remember to take it, if I don't take it immediately when my alarm goes off (I have the alarms on my cell phone and PDA set to go off 15 minutes apart from each other every 12 hrs so I will remember to take it - 26 yrs of being on phenobarb got me used to just taking my meds whenever I went to bed, not on a schedule - this has been hard to remember). The tingling seems to happen after the meds have worn off and a couple of hours after I've taken them.
The no-alcohol thing was easy for me, since I was diagnosed as a kid.:-)

I used to be on a 6 to 8 hour dosing schedule for my meds but now I just take the entire day's dosage in the evening before going to bed.The only challenge though is to get the dosage right since I'm on an alternating dosage of 300mg one day,400mg the next....good thing I have it marked on the calander each month though.

I've been on that alternating dosage schedule for years now since 300mg a day wasn't enough to effectively control siezures & 400mg a day was too much...it was so high at 400mg every day that I'd end up spending almost the entire day sleeping.

Am on 300 mg Topamax for seizure control. Have been on it for 2 years now. Had some pins and needles for the first few months but now I don't have any side effects...except weight loss. Not only are my seizures controlled, but I've lost 20 pounds over the last 2 years. I needed to lose it anyway, but I swear this stuff is a wonder drug. I had been on Depakote for quite some time and had gained an excessive amount of weight...not to mention elevated LFT results. Needless to say, this drug has changed my life. I know another person who takes Topamax for migraine prevention and she had pins and needles too when she first started. Almost a year later, she has been completely migraine free with no side effects. Not to mention the 11 pounds she dropped. The comments about "dying brain cells" and "shrinking heads" are ridiculous. Do some of your own research and you'll know that it's simply not true. The best thing we can do is educate ourselves so that we know more about our bodies and our individial disease state...even more so than our doctors.

Cindy wrote:

Not only are my seizures controlled, but I've lost 20 pounds over the last 2 years. I needed to lose it anyway, but I swear this stuff is a wonder drug. I had been on Depakote for quite some time and had gained an excessive amount of weight...not to mention elevated LFT results.

Sigh. I wish Topamax had the same weight loss effect for me!:-) Ah well - it has managed the migraines as well as the epilepsy, and I can relate - my LFTs were always elevated when I was on phenobarb - they're normal now for the first time in a quarter century.:-) It's a keeper.

crazybaby wrote:

<quoted text>
Sigh. I wish Topamax had the same weight loss effect for me!:-) Ah well - it has managed the migraines as well as the epilepsy, and I can relate - my LFTs were always elevated when I was on phenobarb - they're normal now for the first time in a quarter century.:-) It's a keeper.

That's interesting to hear as,so far I've not run into any problems with elevated LFTs while taking dilantin over the past 13 years.

I recently started taking Topamax for temporal lobe seizures. My biggest problem is that it makes me feel just plain dumb. So much so, in fact, that I had to withdraw from school this semester. Has anyone else had this problem? My dosage has not been established yet and I'm just wondering whether this will get better when it is. I don't want to keep punishing myself for nothing. It's still too soon to tell whether the medication is helping with the seizures since they occur very seldom anyway. Thanks for reading.

if you're interested in reading about cognitive effects with epilepsy medication, go to http://adhocinfinitum.livejournal.com

it'll scare the shit out of you, but it's the truth. you'll be shocked at how legit it is.:/

Thanks, lex, but it appears that those articles only relate to children or old people.

Mary wrote:

Thanks, lex, but it appears that those articles only relate to children or old people.

Oh, okay! Let the children and old people suffer then...

Look at the one about AEDs and neurodegeneration/reduced brain mass in EVERYBODY.

I met someone who has a (now)12 year old daughter who took a natural treatment that worked for her and also someone she knows. Here is her email (copied and pasted) that she sent out. Contact me for more info....

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We, as humans, have the chance to participate in the miracle process. My friend Danielle did that for us by sharing this product. We can do the same. I look forward to a great year with all of you, changing lives through an amazing product and with a group of amazing people.
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contact me and I'll send you information if you are interested. I can put you in contact with Sarah and her daughter and even their neurologist, if you want proof.

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Merry Christmas to everyone!
Aaron

Hello! I have epilepsy since I was about 14 and sice 16 (I think) I´ve been taking topamax and trileptal(oxcarbazepina) and my siezures haven´t stopped, I take tons of medicine and I really feel frustrated because it can passes a whole year without siezures, but then they come back for a short season, I don´t know if it´s because I get under a lot of stress or what, but still, I tink I take too mux medicine and the siezures shouldn´t come back. I´ve asked my doctor for another medicine but he says that the ones he gives me, will have more awake...
I really don´t know what to do, I really feel desperate, I´m even looking for a homemade cure for this thing... because I just keep hearing about people who get medication and the siezures stop and that´s it, and I´m still here, at my 22 with this horrible thing over me.
Thanx 4 listening....

Hi Ross,
I know how you feel. I take Topamax, Zonegran and Klonopin for my seizures now. I have a seizure here and there, although the Klonopin helps with the stress, that seems to bring on the seizures. I might switch from Topamax soon. I was diagnosed in 2005 and have been on two medications prior, Keppra and Lamictal. I had an allergic reaction to Lamictal and Keppra made me crazy.
I feel like I take too much meds too, as I take others in addition to those three, but I feel I have to do what I have to so I will be seizure free...

my mother takes zonegram and topamax her sez.have gotten worse she has been on the zon. for awhile her doc changed what she was taken with the zon, to topamax and so far she has fell hit her head sevral times the doc just wants to send her to specialist instead of changing the med.anyone else had a problem like this??

Mary wrote:

I recently started taking Topamax for temporal lobe seizures. My biggest problem is that it makes me feel just plain dumb. So much so, in fact, that I had to withdraw from school this semester. Has anyone else had this problem? My dosage has not been established yet and I'm just wondering whether this will get better when it is. I don't want to keep punishing myself for nothing. It's still too soon to tell whether the medication is helping with the seizures since they occur very seldom anyway. Thanks for reading.

I am curious, temporal lobe seizures, would this be related to AVM?

I was on Topamax for 7 years. I had the most difficult abdominal pains for the first 2 weeks. It went away. However I did get kidney stones that are one of the side effects. I have since gone off the medication due to not having seizures anymore. Now that I have been off of Topamax and seizure free for 13 years; they have started all over again. My doctor did not put me back on Topamax because of the kidney stones.